Beginner1 advice needed: Thank you for... - Pernicious Anaemi...

Pernicious Anaemia Society
22,784 members16,058 posts

Beginner1 advice needed


Thank you for the explanation of functional deficiency (fogeyme the simpler ones are valuable as they help with understanding the more technical ones)

More advice needed.

Neuro symptoms numb legs and loss of feeling hot water on them. 2+ years ago.

January 2016 legs more numb, ankle reflexes gone. Balance, eyes open and shut gone, feeling faint tired.

Blood test by NHS GP B12 103 – (180 = 1000) in January. IF negative. (I know only 50% accurate)

5 loading injections, blood retested April 19th B12 343 – (180 – 1000) - GP said normal so no more inj. and retest in 6 months!!!

I took the BSCH Guidelines to my NHS GP and pointed out how they differed from Glos. ones, He said he would get back to me – 2 weeks and have heard nothing.

After the 2nd blood test on April 19th I saw a private GP who referred me to neuro, who said it was ok for private GP to give me injections.

I arranged for 5 and then reassess. I have now had 4 at one a week. Neuro symptoms improving but getting bad again by 6th day.

Do you think the MMA and HOMOCYSTEINE tests would be any help in convincing my NHS GP. that I need injections, though my B12 must be quite high by now.

I am not prepared to go without injections after the 3 months without when I should have been getting one every second day.

Do I give up on my NHS GP and go on having 1 a week with private GP (I can just manage that for now) and try supplements to make up the last 2 days. I have tried Boost but it did not cover it.

Nasal spray?

Sorry about the long post, but I had a cataract done yesterday (Glos. NHS very good!!!) so with sore eye and wall bumping walk returned I am fed up..

19 Replies

Hi Beginner1

Being new, I'm relying here on what others have told me.

The most important thing is that if you have neurological symptoms, you need to have B12 injections every other day until no further improvement takes place. This is stated in the BNF (British National Formulary), which is the doctors' prescribing 'bible'.

If you click on my username you will see my previous posts and if you go to the first one I did, you'll be able to see all the information I was given when treatment was withdrawn. This includes a link to the BNF guidelines and also NICE and NEQAS guidelines, plus lots of other good links to information about treatment etc.

You will be able to print the guidelines about treatment and take them to your GP, who you can the push to give you the once every two days treatment.

It must be costing you a fortune for private GP injections. Many people on the site self inject (me included), so this could be a route that would help if all with your GP fails. People here will be able to help if that's a route you decide to help.

With regards to the MMA and homocysteine tests, my basic understanding is that once you have started B12 treatment, these tests will be skewed, though the results may still be raised if you have functional B12 deficiency. Others will be able to tell you more...

I'm sure that others will reply with much more 'solid' information. Sorry I haven't got the brain.power to put anything more together, at the moment.

It's really important that you get the right amount of B12 as soon as possible, in order to prevent potentially irreversible neurological damage so please do push your GP for every other day injections (I do know how hard that is!).

It's no wonder that you're 'fed up'!

Please take care and let us know how it goes x

beginner1 in reply to Foggyme

I have printed copies of the Journals and given them to my GP, he said he would get back to me and hasn't.

My private GP has, I think, given me a special so I can manage it, for now, but 1 a week is not enough.

I have thought about self injecting but I am quite old (even older than clivealive!!) and having just had a cataract done and don't feel up to it at the moment, but guess I will have to learn.

I think the 2 year old neuro symptoms are a lost cause but I shall be mad if the neuro. symptoms since January become permanent because of NHS GP's lack of treatment. Getting them every second day did not happen and now nothing for 6 months - unbelievable.

clivealiveForum Support in reply to beginner1

Cheeky lady beginner1 75 is not old - if you're a tree!!

beginner1 in reply to clivealive

Last year I did not feel old. I designed and made things that raised over $1000 for a friend in America, for a children's charity. This year, lacking proper B12 treatment I can and have done almost nothing, and feel old.

I bet you are a sequoia or a bristle cone pine.

I think I understand about feeling old and I'm middle aged. I meet people in their 80s who have more energy than I do.

clivealiveForum Support in reply to beginner1

No beginner1 I'm more like an English Oak because I'm a bit of acorn-y guy :D

I hope you start to feel younger again this year. Take care.

helvella in reply to clivealive

A bit quercy?

beginner1 in reply to clivealive

Thanks. At least Glos. did a good job on my eye.

FoggymeAdministrator in reply to beginner1

Unbelievable - oh how I wish it was! So many here subJect to the same. Disgraceful. Understand your anger as much the same has happened to me.

Forgot to say, some people here use a variety of methods to get their B12. Nose sprays, mouth sprays, transdermal patches, sublingual nuggets (I hear a good one is Jarrow's Methylcobalamin 5000mcg, from Amazon).

With respect to being quite old 'even older than clivealive!!!'...well, I hope to beat you both, one day.

Take care

I have thought about writing letters to GPs pointing out where their treatment differs from official guidelines and asking that a copy of my letter is filed with my records. Letters are supposed to be filed so in my opinion are better than a phone call or e-mail.

Useful link about writing letters to GP there is an e-mail link on this website. The person who runs it is very sympathetic.

For patients who feel they are not receiving the correct treatment it is possible to complain but this can sometimes lead to patients being labelled as difficult.

I personally did not find PALS useful. If I need to complain I would go to NHS England. I might also consider talking to local MP.

"He said he would get back to me – 2 weeks and have heard nothing."

is it worth contacting the practice manager about the fact you haven't had a reply?

I did take copies of the BCSH Guidelines and the Glos. Guidelines and to my GP and showed him the algorithms and how they differed and left them with him.

I don't think they can label me fussy or difficult - for about 20 years I never went once!!! But I agree about not complaining.

I spoke to Martyn Hooper on the phone and he said he would write to my Gp if I wanted. I have been drafting a letter to Martyn and will ask him to write to them.

2 years is a long time to have those severe neurological symptoms. I have been just like you for 6 months but diagnosed b12d for over 5 years. I do think it would be wise to ask to see a neurologist. You may not get anywhere with getting more frequent injections - my neurologist didn't believe it could be related. I am now self injecting every other day but also waiting for the the results of an MRI of my brain and spinal cord which the neurologist ordered. I just think it's wise to rule out any mechanical cause for nerve damage such as spinal arthritis before putting all your eggs in the b12 basket so to speak.

I have seen a neurologist, and he thinks numb legs are irreversible, but I am hoping that only applies to the 2 year old symptoms, which were not much of a problem. But I do want my balance back, which is new, from January. I have had a head Ct scan and a chest xray both negative.

For 5 days after injections everything improves and then bad again for day 6 and 7.

The problems that go away with injections do sound like b12 then. Seems like you need every other day. Why can't the medics see that?!

My neurologist OKed my daily self injections but the surgery that had referred me to him stopped them anyway!

If there is anyway you can do jabs yourself (or can buy the kit and get a friend to do it for you) it is a way of getting enough treatment that you can improve your health and take your life back into your own hands, rather than being made to suffer.

It's nowhere near as bad as the idea of it!

I have found Solgar 5000mg even better than Jarrows Formulas because they are smaller so fit under your tongue more comfortably. If you look for the offers on Amazon they aren't too expensive.

Good luck!

Thanks, I will look for them.

I hope you find things that work for you and you feel better soon.

"I have found Solgar 5000mg even better than Jarrows Formulas because they are smaller"

It really annoys me that they insist on making higher-dose tablets bigger, when there's no need. My 800 ug methylfolate pills are about 5 times the size of the 400 ug - despite the fact that 800ug is about the weight of a grain of salt. Each tablet weighs about 500,000 ug.

You may also like...